Re: LymeTimes and Other STuff

[Guest guest]

I just received a message from Lyme Times. She said she was behind and hoped

to be getting a 64 page news report out soon.

I offered to do what I could to help.

[Guest guest]

In a message dated 4/17/04 10:45:49 AM Pacific Daylight Time,

IndomitableSpirit@... writes:

Regarding reporting to CDC there is criteria

for a case to be reported, its worth making the calls

to find out what it is. Among other things

there are certain bands involved and it has to be

confirmed in a certain way by testing. You might

want to find out and start there as far as your

state's health department is concerned.

When I listened to the comcast, Dr. S mentioned that when the reporting of

lyme disease was taken out of the doctor's hands and into the labs hands...the

numbers went from 500 to 12,000 in one state.

I believe the criteria is that it has to be doctor confirmed as well as a

positive test result.

www.calchannel.com

comcast

february archives

feb 25 Health and Human Services

9 min lead in

(very informative)

[Guest guest]

In a message dated 4/17/04 10:45:49 AM Pacific Daylight Time,

IndomitableSpirit@... writes:

As far as tick-testing is concerned, the reason

it is not being done in your area - and this is for

anyone reading - meaning anyone's area if it is not

performed near you - is that like anything else it

costs money.

There has to be either a grant from CDC or a state

health grant or a county grant or a university initiative

or private funding, and then someone who actually

knows how to catch the itty bitty things.

Sending someone out who is not knowledgeable would

be worse than no testing - - you would have a report

that there were none etc. etc.

However the funds have to come from somewhere.

CDC had funded some surveillance but this year

they went from funding 6 grants to funding two.

They don't appear to want to know - - hhmmmmm --

or have it recorded. If there is no report,

then it doesn't exist and etc. etc. and you can't

have it etc. etc. and ultimatley it will not cost

the taxpayers money because you can not apply for

disability etc. since you live in a " non-endemic

area " or " no testing results show the presence

of " and etc.

True. And perhaps not where the money should be spent. I would prefer to see

funding go towards helping this with lyme disease, research, better testing,

and educating doctor's.

What I had a problem with was telling me that there is no lyme in my area

when my area hadn't been tested.

katherine

[Guest guest]

In a message dated 4/17/04 10:45:49 AM Pacific Daylight Time,

IndomitableSpirit@... writes:

They learned a good lesson from AIDS.

Nip it in the bud, deny its existence, and never

let anything appear that is any different.

Punish the docs that treat and pretty soon

the rest will give up treating. Its a win-win

situation for the government and for the researchers

who are willing to pay the game and skew results.

Way back at the onset of recognition of AIDS

they began lobbying for more accurate numbers and reporting.

EVerything about AIDS depends on the numbers.

The numbers justify the research. The research justifies

the costs of the treatment and the government programs

to help patients, the housing programs, the clinics,

the outreach, the social services, and more.

Without the numbers as far as case recording and

as far as proof of infected ticks, the whole thing

is dead in the water.

The AIDS movement has emphasized at their conferences

that their success rests on two things, the numbers

and the research. Congress had to respond with

money for research based on the numbers.

Plain and simple.

Whatever your state is, nothing is going to happen

until the numbers start getting reported accurately.

As long as the numbers are not there, it can be open

season on doctors who treat " adequately " and not just

30 days. Keep that in mind and think ahead to where

you want to be three years or five years from now.

Then plan your actions accordingly.

Hmm. Multi tasking for those of us who have a great deal of trouble multi

tasking at this time. HA!

I am thinking we need to get some adequate numbers on those who have battled

lyme and who are currently battling lyme.

I know when I was first looking for answers, I contacted the MS Association,

ALS, and the Myasthenia Gravis Association. They all sent me a questionnaire

to fill out. They were gathering numbers.

I think it would be a good idea for the Lyme Disease Association to do the

same.

I am willing to volunteer my help.

[Guest guest]

In a message dated 4/17/04 10:45:49 AM Pacific Daylight Time,

IndomitableSpirit@... writes:

Dear indomitable Spirit,

Thank you for all of the following information.

in California

Lyme Times information

http://www.lymedisease.org/lymetime.htm

I believe it goes bulk rate and sometimes I have found

they hold the periodicals for weeks at the local

post offices until the carriers get around

to delivering - - or the periodicals get " lost "

as it makes the mail bag heavier so I would not

necessarily assume it was the fault of the Lyme

Times.

BRAIN SPECT AT COLUMBIA:

The machine has been down since before Thanksgiving,

shame on the hospital people for not telling.

There was another hospital in the Greater NY City

area you could have gone to - Dr B's office has the

name. In NJ some go to St. ph's Hospital

in Paterson, NJ which is somewhat close to NYC

but not quite.

One of the docs there who reads spects was formerly

with Columbia reading spects for Lyme disease.

If you have to get the spect read at a Non-Lyme

Literate hospital, you might consider paying

the money and getting a copy of the spect -make

sure you ask for a color copy. They gave me a

black and white one the first time by mistake,

the techinicians do not know better and you need

the colors to interpret.

My point being if you then get a scan in the future

you can have the next person compare with the first,

or you could also have anothe Lyme Literate

person interpret the spect scan. Just a thought.

Regarding reporting to CDC there is criteria

for a case to be reported, its worth making the calls

to find out what it is. Among other things

there are certain bands involved and it has to be

confirmed in a certain way by testing. You might

want to find out and start there as far as your

state's health department is concerned.

As far as tick-testing is concerned, the reason

it is not being done in your area - and this is for

anyone reading - meaning anyone's area if it is not

performed near you - is that like anything else it

costs money.

There has to be either a grant from CDC or a state

health grant or a county grant or a university initiative

or private funding, and then someone who actually

knows how to catch the itty bitty things.

Sending someone out who is not knowledgeable would

be worse than no testing - - you would have a report

that there were none etc. etc.

However the funds have to come from somewhere.

CDC had funded some surveillance but this year

they went from funding 6 grants to funding two.

They don't appear to want to know - - hhmmmmm --

or have it recorded. If there is no report,

then it doesn't exist and etc. etc. and you can't

have it etc. etc. and ultimatley it will not cost

the taxpayers money because you can not apply for

disability etc. since you live in a " non-endemic

area " or " no testing results show the presence

of " and etc.

See how the game works??

They learned a good lesson from AIDS.

Nip it in the bud, deny its existence, and never

let anything appear that is any different.

Punish the docs that treat and pretty soon

the rest will give up treating. Its a win-win

situation for the government and for the researchers

who are willing to pay the game and skew results.

Way back at the onset of recognition of AIDS

they began lobbying for more accurate numbers and reporting.

EVerything about AIDS depends on the numbers.

The numbers justify the research. The research justifies

the costs of the treatment and the government programs

to help patients, the housing programs, the clinics,

the outreach, the social services, and more.

Without the numbers as far as case recording and

as far as proof of infected ticks, the whole thing

is dead in the water.

The AIDS movement has emphasized at their conferences

that their success rests on two things, the numbers

and the research. Congress had to respond with

money for research based on the numbers.

Plain and simple.

Whatever your state is, nothing is going to happen

until the numbers start getting reported accurately.

As long as the numbers are not there, it can be open

season on doctors who treat " adequately " and not just

30 days. Keep that in mind and think ahead to where

you want to be three years or five years from now.

Then plan your actions accordingly.